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Family Members’ Experience With Hospice in Nursing Homes

American Journal of Hospice & Palliative Medicine® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114560213 ajhpm.sagepub.com

L. Ashley Gage, MSW, PhD1, Karla Washington, MSW, PhD2, Debra Parker Oliver, MSW, PhD2, Alexandra Lewis, MSW, PhD2, and George Demiris, PhD3

Abstract Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership from the perspective of residents’ family members has been limited. The purpose of this qualitative investigation was to explore family members’ experience with hospice services received in the nursing home setting. Researchers conducted a secondary data analysis of 175 family member interviews using a thematic analytic approach. Findings highlighted the critical role of communication in supporting residents and their family members. Care coordination, support and oversight, and role confusion also impacted family members’ experience of hospice care in the nursing home. Efforts directed at enhancing communication and more clearly articulating the roles of members of the health care team are indicated. Keywords hospice, end of life, nursing home, family, communication, collaboration

Introduction

Literature Review

The number of nursing home residents receiving hospice services has grown in the recent decades, doubling between 1999 and 2006.1 Furthermore, as the so-called ‘‘silver tsunami’’ of the aging baby boom generation begins, the demand for longterm care is also projected to increase.2 This growth will presumably increase demand for more end-of-life care as well and emphasize the urgency for establishing quality care practices in end-of-life points of care, such as nursing home facilities. Utilizing hospice services in conjunction with nursing home care has several benefits. Hospice improves satisfaction with end-of-life care,3,4 decreases inpatient hospitalizations,5 and improves advanced care planning.6 End-of-life care is based on a caregiver coalition, where health care providers, family members, and patients coordinate care as a triad, versus the more traditional patient and provider dyad.7 Although research has focused on experiences and outcomes of the dyadic relationship, even utilizing family members as respondents in retrospective analysis, much less is known about the family members’ experience. In order to obtain an ideal caregiver coalition and inform quality, evidence-based practices addressing the gap in knowledge surrounding family members’ experience receiving hospice in nursing homes is necessary. The current study aimed to address the following research question: What is the family experience of hospice in the nursing home?

A literature review was conducted using PubMed MEDLINE, CINAHL, Scopus, and PsycINFO with PsycARTICLES databases. Each database was searched using basic and advanced Boolean searches using key terms in a variety of combinations. To encompass hospice, alternate terms of ‘‘end of life’’ and ‘‘palliative care’’ were used additionally to maximize results, but inclusion was focused only on hospice and not on end of life or palliative care. To capture the nursing home literature, the terms ‘‘long term care’’ and ‘‘long term care facilities’’ were added to the search. Finally, to account for family members, the terms ‘‘informal family members’’ and ‘‘caregivers’’ were also searched. Reverse-search methods were employed and a final search using a general Internet search engine was conducted to locate any applicable grey literature, such as 1

Department of Social Work, University of Nebraska-Kearney, Kearney, NE, USA 2 Department of Family and Community Medicine, University of Missouri, Columbia, MO, USA 3 Biobehavioral Nursing and Health Systems, School of Nursing & Biomedical and Health Informatics, School of Medicine, University of Washington, Seattle, WA, USA Corresponding Author: Debra Parker Oliver, University of Missouri, MA 306G, Columbia, MO 65212, USA. Email: [email protected]

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American Journal of Hospice & Palliative Medicine®

2 theses and dissertations. Although neither ‘‘resident’’ nor ‘‘patient’’ was included in the search strategy, researchers noted that the terms were used interchangeably in the literature when referring to nursing home residents who were also hospice patients and, thus, adopted this convention when referring to residents/patients. To ensure applicability to the current study, literature was limited to those studies conducted with samples from the United States. After close scrutiny of hundreds of articles, it was determined that only 14 addressed the family member experience of receiving hospice care in the nursing home. Within this limited body of research, the family member experience is narrowly described, indicating a distinct gap in the literature. Previous studies have found that, while family members are typically able to identify ways in which the hospice–nursing home collaboration could be strengthened, they generally report a positive, supportive experience with hospice care in the nursing home.8,9 Family members have indicated that the nature of hospice support ranges from emotional or spiritual support 4,8 to providing additional oversight of the nursing home and the resident’s care8,10,11 and providing patient advocacy.12 The perception of hospice as an additional support for patients and families may provide insight into why receipt of hospice care in the nursing home is related to better overall quality of care ratings by family members, as research has shown that family members of residents who have earlier hospice enrollment prior to death are more likely to report better quality care ratings.3 Earlier and longer length of hospice care may translate into more opportunities for families and patients to receive the support of hospice services. This is congruent with family member reports that greater attendance to the patient and more social support are important to provide quality care at the end of life in the nursing home setting.13 A series of focus groups with bereaved individuals who had experienced the death of a family member in a nursing home or other setting revealed that, compared with those who received hospice services, family members whose loved ones did not receive hospice were more likely to report that they felt the need to advocate for their loved one’s care.14 Family members in this and other studies noted that they perceived hospice to be a tool of ‘‘oversight’’ over their loved one’s care when they were not available,8,10,11 which may have assisted or reduced the family’s perceived need for advocacy. The addition of more caring professionals has been often cited as important to family members who have reported that social support and the physical presence of someone supportive contributed to high-quality end-of-life care for residents in nursing homes.13 Research has also shown that families express concern about nursing home staff availability and question their expertise in end-of-life care.10,13 They have also reported trepidations over nursing home staff’s level of respect for residents.15 Although hospice care is related to better quality outcomes in the nursing home, barriers to hospice services remain in this setting. A recent study found that even when procedures were in place to systematically assess whether new nursing home residents would benefit from outside resources, residents

eligible for hospice services were often not referred to hospice.16 Lack of knowledge of hospice benefits, on the part of both nursing home staff and residents’ family members, was identified as a barrier to hospice referral. Other research has shown that family members find late hospice referrals (or no hospice referral) to be problematic.8-10,17 Other challenges noted by family members include poor interagency communication,18 lack of collaboration and care coordination, and overlapping professional roles.9,12

Methods Researchers conducted a secondary qualitative analysis of interviews obtained during a federally funded randomized clinical trial of an intervention for family members of hospice patients (Grant No R01NR011472 from the National Institute of Nursing Research. Debra Parker Oliver PI; ClinicalTrials. gov registration number is NCT01211340). Additional details of the trial, including the randomization process, have been published elsewhere.19 Interviews were conducted with participating family members approximately 2 weeks after the patients’ death or hospice discharge. All study participants took part in an interview unless they declined to do so or were unable to be contacted after repeated attempts. Although many participants in the original trial were receiving hospice services in other settings, only interviews of family members of nursing home residents were included in the data set analyzed in the present study. Early in the original trial, interviewees were not specifically asked to comment on their experience receiving hospice services in a nursing home setting; however, it soon became evident that, for the family members of nursing home residents, understanding the nursing home–hospice collaboration was vital to fully understanding the hospice experience. Therefore, the following 2 broad, open-ended questions (followed by additional probes) were added to the interview guide to specifically elicit information about the hospice–nursing home experience: (1) What was it like to have your loved one receive hospice services in a nursing home? and (2) What benefits or challenges, if any, did you encounter while your loved one received hospice services in a nursing home? Interviews of all participating family members of nursing home residents, regardless of whether or not they were specifically asked about receipt of hospice in the nursing home setting, were analyzed in the present study. Interviews were digitally audio-recorded and transcribed verbatim by research staff prior to analysis. The parent project was approved by the institutional review board of the sponsoring University. All data were stored on a secure password-protected server at the sponsoring University, and only authorized users with institutional review board clearance and approval by the principal investigator were allowed access.

Data Analysis Researchers conducted a thematic analysis of participant interviews. Among published qualitative methods, this process

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Gage et al

3

Table 1. Summary of Resident Characteristics.a

Table 2. Summary of Family Member Characteristics.a N ¼ 166

Demographic Characteristic Sex Female Male Age (years) Mean (standard deviation) 21-50 years 51-60 years 61-70 years 71 or more years Unknown Race Caucasian African American Other Education Less than high school High school/GED Some college/trade school College/graduate/professional degree Other/unknown Marital status Married Divorced Widowed Other

122 (73.5) 44 (26.5) 86.0 (9.8) 0 (0.0) 5 (3.0) 6 (3.6) 154 (92.8) 1 (0.6) 156 (94.0) 6 (3.6) 4 (2.4) 42 (25.3) 60 (36.1) 32 (19.3) 19 (11.5) 13 (7.8) 30 (18.1) 23 (13.9) 108 (65.0) 5 (3.0)

Abbreviation: GED, general equivalency diploma. a N (%) unless otherwise indicated.

most resembled thematic analysis as explicated by Braun and Clarke20 who outlined the following analytic steps: becoming familiar with the data, generating initial codes, and developing and refining themes. First, to become familiar with the data, researchers independently read all the transcribed content. Then, they met to develop an initial coding frame informed by both their preliminary review of the data and by a review of the existing literature (previously described). They coded 10% of the interviews as a team, discussing and refining coding definitions throughout the process. Next, they independently coded an additional 10% of the interviews, meeting afterward to calculate intercoder reliability, aiming for 80% agreement or better. They were unable to achieve 80% agreement after 1 round of independent coding and, thus, met again to discuss discrepancies and further refine and clarify code definitions. After a second round of independent coding, they achieved 83% agreement and divided the remaining interviews (70% of the sample) to be independently coded. Codes were ultimately grouped into conceptually similar themes that illustrated family members’ experience of hospice in the nursing home, described subsequently.

Findings Characteristics of Patients and Family Members Researchers analyzed interviews conducted with family members of 166 nursing home residents (Table 1). Multiple

Demographic Characteristic Sex Female Male Age, years Mean (standard deviation) 21-50 years 51-60 years 61-70 years 71 or more years Unknown Race Caucasian African American Other Education Less than high school High school/GED Some college/trade school College/graduate/professional degree Other/unknown Marital status Married Divorced Widowed Other Relationship to patient Spouse Adult child Other relative Other/unknown Family member employment Full time Part time Retired Not employed Other Family member income

Family Members' Experience With Hospice in Nursing Homes.

Research has documented numerous benefits and challenges associated with receipt of hospice care in nursing homes; however, study of this partnership ...
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